Something I wrote during my travels along the West Coast, before the Occupy Wall Street anniversary (#S17), which was yesterday. I continually debated in my head whether or not to post this, especially given how much my involvement in organizing has vacillated (not because of lack of interest or commitment, but because of the severity of my health condition). Regardless, the crux of the piece still applies.

Over the past year, a sudden and unexpected worsening of a pre-existing medical condition has caused me to re-evaluate my strengths and limits as a ‘social justice activist.’

Like many people throughout history, I’ve had to learn to adjust to the changes in my body: there is now a mandatory minimum number of hours of sleep I must have, a mandatory maximum number of hours I can work in a day, and there are diets and exercises that may improve my long-term health outcomes.

That said, my experience suggests that there exist considerable confusion about the daily struggles of people with chronic health conditions, particularly people who deal with chronic pain. There might be many reasons for this, but mere visibility plays a key role: people can’t understand what they can’t see. You can see someone’s crying, screaming, yelling, and various expressions of pain, but not the pain itself.

I also choose to define pain broadly, referring to emotional, physical, psychological, spiritual, or any other ways in which pain can overtake a person’s lived experience. This understanding of pain also shapes my understanding of my own struggles, for as a queer activist of color with a chronic health condition, I know that am fighting pain on multiple fronts: the physiological pain stimulated—in my case—by irreparable nerve damage; the psycho-emotional pain of years of individualized social ostracism and alienation; and the transgenerational pain of centuries of racism-fueled colonization and genocide against my family and ancestors.

Explaining all of this in a manner that captures even a modicum of the experience is a gargantuan feat: at best, I am left with an annoying task of trying to find precisely worded allegories and metaphors to describe a pain that I feel on a constant basis.

While I agree with Audre Lorde that poetry is not a luxury and can be a cathartic conduit for releasing repressed pains, I’ll have to leave the poetics aside for now and try to tackle the issue that’s been troubling me the most. What I want to do here is simple in concept but difficult in method: explaining how my chronic pain impacts my work as an activist.

As the World Burst Aflame

For me, one of the most salient examples of my struggle to deal with my chronic condition while attempting to do the hands-on work of an activist came during the emergence of Occupy Wall Street last September.

To be physically distant from a movement and consequentially feeling out of the loop is one thing. But to be living and working so near one of the most impactful movements in recent memory and still being unable to be physically present made me feel hopeless and aggravated.

Geographic distance was not a barrier in this case—but for my body, hardly sustaining the energy to make the commute to work and back—and in the worst occasions, being slogged around from one ER to the next—Wall Street may just as well have been at the other end of the planet.

My problems started one early September morning (last year), waking up unable to feel the left side of my body while the world around my bed spun vigorously. I felt like I was injured at sea, throttling about in a flimsy boat during a torturous typhoon. Everything was spinning so rapidly that I couldn’t read the front page of a newspaper if I tried, or see whether my father’s expression was a smile or a scowl. Quite literally, from one day to the next, my body had unleashed a cataclysmic storm that I’ve yet to recover from—and probably will never fully recover from.

I was diagnosed with multiple sclerosis (MS) four years ago, after a sudden, inexplicable blindness in my left eye (optic neuritis). I regained my eyesight within months, and although I experienced certain MS-related symptoms while finishing my college years, I was virtually asymptomatic for three years. As many know, MS is a chronic, neurodegenerative condition that often first rears its ugly head in young adults (ages 20 to 40), altering life paths in unexpected ways and demanding changes to something that is nothing if not unpredictable. The embodied experience of MS varies from person to person—as remarkably complex as the nervous system is, individualized manifestations of the conditions are simply unpredictable.

Although I was not problem-free since I was first diagnosed, I can say that I was generally satisfied with my state of health as I finished college and entered the workforce. Then swiftly, with scant support and preparation, I started to go through a wave of relapses.

The extreme vertigo I felt in September was only the beginning of an immunological onslaught that would re-shape the way I experienced the world. I had a constant burning sensation at the back of my neck. I was experiencing a mental fogginess that made getting through the work day a nightmare. Some days, an all-body fatigue would overwhelm me, forcing me to collapse into sleep the moment I snagged a seat on the subway.

Worst of all were the hard-to-describe symptoms—the symptoms that simply nagged me all day, but seemed too strange to be real, like the buzzing sensations that ran through my abdomen and thighs, the periodic numbness and weakness in a leg or finger, or the dreaded feeling of being “squeezed” at the head. (I later learned that a term, “dysesthesia,” is used to refer to these hard-to-describe sensations) Needless to say, these were all uncomfortable sensations that made it difficult to make it through otherwise simple life tasks.

Like some fires, the changes that began in my body started happening suddenly, unexpectedly, and with awe-inspiring speed. And it was that same sort of storm-like celerity that distinguished much of what happened in my life and the world around me between September 2011 and January 2012. The question is: what initiates the spark? And why?

With OWS, the opinions have run the gamut, from recent inspirations seen in the Arab Spring and los indignados, to changes in U.S. credit-consumption culture that finally affected wide swaths of the white middle class. For better or for worse, for its shortcomings and its strengths, my city became the sparkling hub of a phenomenon that I wanted sorely to engage in—a movement simmering with energy, confusion, creativity, frustration, and optimism all at once.

But as much as the movement meant—for some—a connecting across class, race, and gender lines for the creation of revolutionary community, my family would not be a part of any of this. My older brother, who spent most of his life battling a crippling, painful rare medical condition of his own, was finally reaching his final months of life. My parents cried, yelled, and appealed to the supernatural as I prayed that my body would hold its ground. It was clear that a burden my family carried for decades was now igniting an adverse physical reaction in my body. I prayed that I would at least make it—body and mind—to the funeral of the one person who taught me the most.

And so it was that while the world was catching afire, my nerves were becoming greatly inflamed. Everything seemed urgent. Everything—from our bodies to the electronic media to capitalism to the global biosphere—seemed frail enough that it could break apart in days, hours, or minutes. More importantly, however, was the ethereal connection I felt to my mortality—my very fragile humanness—and the significance of the living moment. The importance of now.

From then on, although my body felt like cinders, I felt spiritually reignited to fight.

Fighting for What Matters

What was an otherwise relatively controlled, asymptomatic MS for three years went completely haywire in a matter of three months (September through November), and it was after several disheartening attempts of dealing with doctors, nurses, hospital administrators and my health insurance that I was able to procure the medication that would tame the beast that had unleashed itself so suddenly and unexpectedly.

I now receive a monthly infusion, and several months after the unexpected set of relapses, the condition has supposedly stabilized. However, it wrought irreparable damage to my central nervous system that has morphed the way I live.

Chronic headaches and fatigue are no longer minor nuisances that I can fight off with a cup of coffee or aspirin. These days, I wake up and fall asleep with a constant throbbing at the back of my head, and under conditions of high stress, humidity, or exercise, the throbbing persists at a faster rate, spreading to my upper back and ears.

The medication I’ve been taking for the headaches have been superficially helpful, at best, making it tolerable to get through the day. However, the same medicine also worsens my almost-equally crippling fatigue that has its own drug treatment, meaning that I’m often playing hop-scotch with potent pharmaceuticals day and night.

What has been among the most harrowing of my experiences has been the ability to relay what I’m dealing with to those close to me, and has been one of the most puzzling identity-related experiences of my life. As a queer cismale Latino of urban, working-class origins, having conversations about race, gender, class, and sexuality have been a part of my adult life for quite a while, and although I don’t think anyone can be an expert at these things, I was at least somewhat familiar with the territory of conversation. However, whenever I started bringing up my health issues at meetings or other social gatherings, I sensed a panoply of confusions and well-intentioned concerns.

It is important to recognize where I would lie in a privilege spectrum, if such were to exist. Although it is absurdly reductionist, for argument’s sake it would be obvious that I hold a good deal of privilege relative to other individuals with chronic, degenerative conditions: I am young, mobile, and not obviously sick as far as appearances are concerned.

This, however, is the crux of my dilemma: how do I—someone with an invisible, unpredictable (but sometimes crippling) chronic condition go about explaining this, even when it is to a trusted, warm-hearted audience?

How do I explain the sudden onset of mental fog or crushing fatigue one moment, or a sudden ebb of symptoms the next? These are difficult questions I know others deal with as they go through the process (like I do) of working on campaigns, facilitating meetings, knocking on doors, or juggling various other life (non-activism-related) demands.

In mentioning my experiences here, what I mean to convey is just how crippling a chronic condition can be in ways that go far beyond physical impediments. When I was having difficulty walking, it wasn’t the temporary incapacity to walk that most aggravated me.

What truly made me feel disabled was being unable to see my brother in the hospice program where he was sent, or to be present at the general assemblies happening just miles away. As with other forms of social exclusion, I felt the burn most strongly in being absent—emotionally, mentally, spiritually—where things truly mattered.

To Have a Body and a Voice

It is several months later and my MS is seemingly under control—though I continue to live my day-to-day with chronic pain and fatigue. Today, I experience activities that matter with a new level of gratitude. I am grateful to be able to be here, typing this, reflecting on issues of carnal importance (for what could be more important than the fight for one’s life and freedom?).

I’ve also made decisions that reflect the lessons I’ve learned in the past year. Though I may live with a limited reserve of energy, I’ve chosen to spend as much of it as possible doing what I think will enhance my spiritual and intellectual potential as well as contribute to liberatory movements. That said, my struggles are constant and run deep; I share them with the understanding that I have privileges many others in similar situations do not.

That I am able to publicly voice my opinion with ease—unshared dissent, especially—came about only through a certain amount of accrued social and cultural capital, is something that is all too often ignored in our world.

Even among us revolutionaries who talk about capitalism, ecocide, and heteropatriachy, we’re often mute about the sort of capital that Marx did not truly discuss—the love and support of friends, family, and colleagues, a knowledge of cultural norms, an ability to glide through life without bumping into as many obstacles as others: what some call social and cultural capital.

You may be wondering why I choose to write about voice and privilege in relating my experiences with pain and activism. I do so, first, because I think this is part is of the struggle for justice. Acknowledging our common humanity, as well as the social realities that make our lives painfully different, is very much part of the work for social liberation.

I also write about voice and privilege because a newfound recognition of my humanity has made me fear complicity through silence. As we continue to awaken to the harsh realities that mass silence has created in the form of our prisons, military and medical industrial complexes, and ecocidal food industries, I’ve also come to realize (with my brother’s help) that I’m of no use hiding in a library corner or computer desk if that is all I do.

There’s an online meme that’s become popular as of late that has become branded in my brain.

This message is tremendously simple and clear. Confronting the death of a loved one, dealing with chronic pain, and being part of a social movement provided me a crucial perspective on exactly how to be someone. Admittedly, it can be frightening to relinquish our patterned, obedient behaviors to become willful agents, but what is there left to lose? After all, whose lives and freedoms are we fighting for?

My fatigue has kept me from doing much writing since returning back to the East Coast, where I’ve been focusing my attention on routinizing healthy practices (eating plenty of greens, doing yoga, and experimenting with a new set of painkillers).

But it’s the first of September, Labor Day weekend, and the following entry from Wikipedia entry caught my attention:

“Paradoxically, because of the importance of the sale weekend, some of those who are employed in the retail sector not only work on Labor Day, but work longer hours. More Americans work in the retail industry than any other, with retail employment making up 24% of all jobs in the United States. Only 40% of those employees have health insurance [9], and only 3% of retail sales employees are members of a labor union [10].”

It’s a sad state of affairs, but emblematic of our post-industrial, neoliberalized economy, that Labor Day has become co-opted in such an egregious, surreal manner. First celebrated in 1882, before the notorious Haymarket Riot that many activists and revolutionaries commemorated this past May Day, Labor Day weekend has now become a summer send-off holiday for barbecues, weekend getaways, and, of course, my favorite spiritual and intellectually uplifting exercise: shopping. While workers with secure jobs can enjoy these luxuries, what about the folks who have to run the hotels, work at the retail stores, keep the trains and buses running? Even if a personal decision was made to work this weekend (to make those much-needed bucks to pay for groceries or electricity bills), isn’t that as much a sign of how deeply entrenched worker exploitation is? That we’re making so little that we’re left asking for more hours at a job we probably dislike, as opposed to doing something more gratifying at home or in our community?

The significance of Labor Day was never all too well-acknowledged in my mind until this year, when I started to digging back into labor history and recognizing the relentless sacrifices our ancestors made to enable even the smallest reprieves from capitalist exploitation. Global neoliberalism has reversed many of those gains for many of us, with the precipitous drop in unionization rates and substantive, full-time jobs with health insurance.

Supposedly: first Labor Day march to Union Square in NYC, 1882

This issue strikes a personal chord with me, and not only as young adult who has experienced a fair share of low-paid work with little benefits. My 54-year-old mother just started a job at Pathmark where she’s being asked to work this weekend. It’s part-time, no health insurance, and no real benefits. And what has she gotten for decades of toiling away in this country, helping serve clients at delis and restaurants morning after morning? Minimum wage. One must truly salute the flag for that.